When I rise the mask goes on to keep the pain out of sight
It seems to make everything appear all right
The nightmares just won’t go away
They don’t know how I cry at night,
If only I could have helped you to stay
How could I have known it would be your last day?
For years this pain I will have to bear
I find myself looking for you everywhere
People think that I am amazing and strong
But oh they are so very wrong
They say I have dealt with your death the best,
But without this mask I would be a total mess.
I am a retired paralegal and volunteer producer of high school musical theater. I am also a parent of four beautiful adult children; only now, two of them are beyond the veil in a place where we cannot visit, hug, laugh or cry together.
We all know that everyone processes grief differently. I do my best to maintain my composure, yet I have found that the walls within my home can close in on me when I do not allow myself to be real. Much of the time I feel I must fake it and this is exhausting. Sometimes the mere challenge of trying to appear okay literally zaps me of all my energy. That is when the mask becomes so heavy that I simply have to take it off for a while. Of course, being the mother that I am, I put the darn thing on again so as to not cause anyone undo discomfort. My surviving children, husband and friends have become accustomed to me being okay.
But, what about me? I think I really need this mask! Sometimes I even wear it for myself because I want to have a bit of time away from my sorrow. At other times I wear it just because it is too challenging to manage social situations without it. I guess you could say that I have become “one with the mask.” Its not that I’m going out of my way to hide something or fool anybody, it just gets to a point in the grieving process when I begin to feel like most people are not interested in hearing that I am still broken over the loss of my child.
When in the company of friends, perhaps like you find at monthly group meetings in your local chapter of The Compassionate Friends, I am safe to share the depths of what I carry behind my mask. When participating in one of the many advocacy organizations for addiction awareness and education, I find it is truly helpful to spend time with people who understand how I feel. Individuals in this setting have either experienced the agony of trying to help a loved one with addiction or have endured the unspeakable loss of a loved one to the disease of substance use disorder.
Most of us are not okay. We may be broken and altered but our hearts still beat. We have much to give and we must do so in order to heal. However, the grief journey takes time and is colored by our past, often blurry present and undeniable future that has been forever changed. Nevertheless, I am still healing and that is okay.
The mask represents feelings and emotions that we try to keep at bay. Since I am a visual learner and very comfortable with the use of props, I have indulged use of them in workshops. Actually, my use of these tools comes naturally to me in my background as a paralegal and current producer of high school musicals; the practice of law is quite often a combination of comedy and tragedy demonstrated through folly and human interactions, and my thespian nature always leads to storytelling. Isn’t that really why we are all here? Our stories and sorrow is often what brings us together searching for ways to heal our broken hearts.
We said goodbye to our eldest of four children, Josh, in the summer of 2008. He died at the age of 27 of a toxic overdose of alcohol and opioids. My experience with loss from substance use disorder did not end there. Sadly, after six years of trying to love our youngest, Logan, through his depression and anxiety after losing his eldest brother and best friend, we also lost him in 2014 when he was 22. This time to a Fentanyl patch overdose. The circumstance for each of their deaths is somewhat different, however their struggles were very much the same with opioid prescription pain medication dependency. They were working the steps and had every hope for a future in recovery. I am certain that feelings of shame disappointment got them long before their last use did. Their passings occurred after each spent several months in residential treatment and finding sobriety only to relapse one final time. Tragically, sometimes there are just no do-overs.
Because of the way our kids died, people don’t usually want to talk about them. Even in my home, I am almost always the one who will bring up their name or refer to the boys first. The absence of Josh and Logan is just too painful for everyone and the emptiness created is a void that cannot be denied. In social circles, people who are addicted or have died from overdose become the subject of fearful taboos only to be dreaded and not discussed. We know that our kids were so much more than the disease that took them away from us way to soon. They lived and were people who deserve to be talked about and remembered. Any time someone mentions their name, sends me a photo or describes a fond memory, it is a beautiful melody to my ears. Like many of you, I can still hear their laugh, see their smiles and their hands, and feel their hugs.
The afflicted also wear a mask. They do their best to hold onto their secrets for countless reasons, among them are fear, ridicule, withdrawal, isolation and guilt or rejection to name a few. They face discrimination, stereotypical prejudice and even stigma and shame from within treatment, their recovery community, medical providers and a society that largely views them as immoral, untrustworthy and socially deviant. The lack of an educated and understanding community deeply diminishes opportunities for evidence based treatment options and compassionate care plans for treatment like what is provided to individuals who suffer with other diseases. Consideration that recurrences of use are a normal part of recovery have not been widely experienced by the afflicted and so it is not unusual for negative messages to continue playing in the addicted mind thus decreasing positive outcomes for recovery. In order for our loved ones to feel free to remove the mask, open up about their illness, triggers and recurrences in use, families and society must embrace that substance use disorder is a chronic recurring brain disease and approach the subject without judgment and shaming.
Who are we to judge that which is too painful to speak of? Addiction is a human experience ~ not a deviant one. It is a human desire to find relief from pain. Pain, whether it is physical, and/or emotional, begs for relief. I so appreciate this quote from the film, “The Fault In Our Stars,” which references, “That’s the thing about pain, it demands to be felt.” It is hard to deny this message because the use and abuse of substances quite often stems from an unresolved issue such as depression, anxiety, lack of self-esteem and/or related mental health conditions. I believe addiction is ultimately a crisis of the heart which is tragic because so many addicted people are among the most sensitive and genuinely tender souls.
“Research tells us that addiction is a disease like any other, that its roots are genetic, biological and environmental. But rather than treating it like the disease that it is, society treats addiction like a moral failure. Those who suffer with this disease – along with those who love them – are isolated by judgment and shame.” (www.shatterproof.org)
SOS(S) will work to increase discussions through the sharing of stories about family journeys through treatment, recovery and perhaps, sadly, the story of a loved one’s death from a substance related cause. It is my hope that we can change the dialog by giving respect to those afflicted with substance use disorder. For those we have lost, share respect for their battle by acknowledging the fight and struggle of their disease. As we peel off layers of society’s collective view and judgment more people will begin to feel good about choosing treatment rather than taking the fall into despair and hopelessness.
Research also has shown that people with substance use disorders are viewed more negatively than people with physical or psychiatric disabilities.1,2 In a public perception study the term “abuse” was found to have a high association, with negative judgments and punishment.3 Is it any wonder that the nature of afflicted people facing stigma, guilt and shame from their use or misuse of substances will further alienate them from family and friends and co-workers? Shame and concerns about social, economic, and legal consequences of disclosing a substance use disorder may deter help-seeking among those with substance use disorders and their families.4 We have to create a climate of truth and trust in order for everyone to seek the care they need.
Let’s do what we can to end the shame and secrecy surrounding addiction and to encourage evidence-based treatment. Changing dialog and attitudes will give rise to replacing stigma with compassion, healing and genuine hope for all seeking recovery from the disease of substance use disorder.
Time to for us all to take the masks off and share!
~ D
There, but for the grace of God, go I.
1 Corrigan, P.W., Kuwabara, SA., O’Shaughnessy, J. (2009). The public stigma of mental illness and drug addiction: findings from a stratified random sample. Journal of Social Work. (9)(2): 139-147.
2 Barry, C.L., McGinty, E.E., Pescosolido, B.A., Goldman, H.H. (2014). Stigma, discrimination, treatment, effectiveness, and policy: public views about drug addiction and mental illness. Psychiatric Services. (65)(10): 1269-1272.
3 Kelly,J.F., Saitz, R.D., Wakeman, S. (2016). Language, substance use disorders, and policy: The need to reach consensus on an “addiction-ary”. Alcoholism Treatment Quarterly. (34)(1): 116-123
4 Botticelli, Michael P, Director, Executive Office of the President Office of National Drug Control Policy (2017) Memo, Changing Federal Terminology Regarding